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Friday, August 27, 2010

Chapter 2..."It Should Have Been Me"

I found out I had MS on Friday, July 2...
and these were the words my husband said to me later that night.
"It should have been me".

Very similar to the words my Mom said when I told her...
She said "I'm old...I wish I could take it from you".

But it doesn't work that way,
This thing we call life.
I've always told my girls "you get what you get".
But I never meant this.
I meant what color straw you get or what prize is in a happy meal.
This is no happy meal!
I've got it and I can't give it away.
If only, right? ;)

Anyway, as I walked out of the dr's office that morning to find my husband and daughter in the waiting room (they already knew too),
everything changed for us.
Suddenly, mommy had a problem.
Usually I'm the one helping them with their problems.
Now I'm carrying a stack of books to teach me about my new companion for life...Multiple Sclerosis.

I remember seeing this sad, knowing look on my husband's face and tears on Jordie's face.
(Poor girl...and here she thought she was going to tennis!)
And I knew Taylor would be calling that night from her ballet school in Maine
to find out the results of my tests.
I thought to myself..."this is the hard part. I can handle anything but what about my girls?"
After lots of tears, hugs and reassurances (even through the phone;)
We started doing what had to be done.

First a few phone calls.
I also told my girls from the beginning that this was nothing to be ashamed of, that we did nothing wrong, and they should feel free to tell their friends if they wanted to.
We all need support and for a teenage girl, their support is often their friends...and each other!

So, what next?
Well, that afternoon was the first of 5 days of IV steroid treatments at the hospital. As I drove in to the hospital parking lot and parked in the space reserved for outpatients, that's when I burst into tears.

Me...at the hospital? But hospitals are for SICK people, not people like me!
But into the hospital I went for my first IV.
Have you ever heard of a transfusion center? I hope you never do.
That's where I had to go for my IV but worse than that, that's where outpatient chemo is done. I think that's when I knew for sure how fortunate I was. It could have been worse
Much worse!!!
Don't get me wrong, MS is no picnic.
There is no cure.
It still stumps the medical community in many ways, although they have made some progress and continually work for more.
But it is sneaky and stealthy...and you ALWAYS have it with you.
Some days the symptoms are not so bad, some days they're worse.
But it doesn't go away.
You may have no signs of MS for years and you may have LOTS of trouble within a year.
There is no single path it takes...and it isn't the same for two people.

But back to that first few days.
There were sleepless nights.
(you don't sleep on steroids)
Lots of cuddle time with my family

(and while I tried not to sound like it on the phone, I missed Taylor terribly. When she offered to come home, it was all I could do to say no when I really wanted to say yes. But she was where she was supposed to be, you know?)

Let's see...what else did steroids give me...
Tons of energy...
I started a new blog (which I haven't done anything with) started a book (let that go too), planned a trip to Europe, started to think of ways to raise money...(tutus and cupcakes)

AND awareness for MS...one of the "silent" diseases and I ATE.
Hey, steroids make you hungry!!!;)
That first weekend Jordie made Taylor's famous Veggie pizza (yum!)

and I casually mentioned that pineapple upside down cake sounded good so
Voilà...my husband made me a cake.

Ask me how long that lasted around here;)
Steroids, you know. haha

After the first round of IV's, I took to wearing long sleeves.
In July.
In Florida.
Because I could tell that it bothered my girl to see an IV port and my arms looked like this..(actually, they got much worse but who needs to see that. Apparently I bruise easily. And don't you love the iv cover I made up? a tye-dyed sock!

Not horrible but for a scared 13 year old girl...just too much, too soon.
Kind of like the arms of a drug addict, I know.
I now have an idea of how they feel.
After 5 days of steroids, they took me off...cold turkey.

Yikes...can you say addicted?
Because I crashed and went into withdrawal big time!
I mean, I was bawling when my husband came home from work,
Couldn't talk to Taylor to tell her goodnight because I didn't want to upset her by bursting into tears, started making a list of things I needed to do and teach my girls in the next year, as if that was all I had, freaked out at how puffy my knees got overnight and called the dr's office begging to go get more IV steroids because I felt better then.
If that doesn't sound like an addict...
The nurse thought so too, so they called in oral steroids to "wean" me off.
They don't always need to do that but apparently I'm one of those people.
Now we know...for next time.

So what comes next?
Well, the fine art of learning to live with MS.
That's what comes next...
Getting on with Life.
Not crying about it...well, not too much anyway.
Lots of praying about it though!

But that's all for another chapter...another day.
I needed to get this one in before Pink Saturday tomorrow.
The theme is an inspirational story and I have a few of those.
Don't worry, I'll do my best to make it short and sweet.
I'll do my best...but don't count on it;)
And by the way...the Barn Chicks day is NEXT Friday, not today.
Sorry about that!

Okay well, if you stayed with me through all of this, thank you and have a great weekend. And I'm sorry it was sooooo long.

Also, please remember, one of the reasons I am doing this is there is somebody out there who just found out they have ms or think they do. Hopefully they have somebody to talk to but if not, I'm here!

And to my husband who wishes it were him and not me and to my mom who wishes she could take it from me, I love you for that.
Thanks anyway!
As much as you would like to, you can't have it.
God gave it to me.
I don't know why but he does.
So we just have to have faith, trust, hope...
and courage.
But I will let you help me through it.
Because I'm sure every once in awhile, I'll need a little help;)

Oh my sweet Suzanne, my heart does go out to you...you are handling all of this with such grace though. I know it probably doesn't seem that way to you sometimes, but always remember that when we run out, God fills us up!

Praise Him that you have such a wonderful support system in your family and friends. You are also serving as a tremendous role model for your beautiful girls by showing them how to handle life's lemons!

Good Morning Suzanne Sweetie...I am so happy to see you write this out. That is wonderful theraphy and it helps to share with others. I love your tie dye sock, you might be able to market that to others in need. It is really cute.

I have been sick (4 months now)so I haven't been by in awhile. Please forgive me. I want you to make sure you stop by my blog on Saturday as Country Wings is one of the (5) places for a $1.00 a post from Guideposts. Colette is doing well. I will continue to storm the heavens in prayer for you my sweet friend. You have not been forgotten. Remember to take one day at a time. I know it is hard, but we must not get ahead of ourselves.

Have a beautiful day, do something kind for yourself sweet friend. You are in my prayers and SO loved. Many hugs and much love, Sherry

Thank you for writing this! Thank you for sharing your journey. It is painful to read but also inspirational. I know it will help someone some where. As for me it has touched me and moved me and inspired me. You are so loved by your family and so many others. I am truly blessed by you! You and your sweet family continue in my prayers.

Your sweet hubby. It's so wonderful you have such a loving family. I had cancer when my kids were teens and I know how hard it can be. It took me awhile to get where you are already.....with a positive attitude.

I truly admired your strength and courage. And such a wonderful attitude, and beautifully written! You are blessed with such a loving family who must be so proud of you. Keep on writing, I would love to follow you through this. I forget if you had said this before, but what were your first symptoms? I will be thinking of you daily and have a wonderful weekend!XOXO

I don't have MS, I have fibromyalgia and slight scoliosis. I can totally relate to how you feel. I got a form to get a temporary handicap parking and didn't want to get it. The only good thing I thought of was parking on the beach for free (in Los Angeles).

It's horrible when you have to face being ill. Then you have to make adjustments to your life and hope for the best.

My 12 year old daughter is my ray of sunshine but often she forgets. Mommmy just can't do everything. Then other days she wants to help me. I feel like I've stolen part of her childhood away from her.

I don't really have anything I feel I can say other then thanks for blogging about your journey! I love that you say to your kids to talk about it, nothing to be ashamed of. My mom always hides her health problems, and I never understood it.